Rare Care Podcast
Rare Care Podcast
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Recent Episodes
224: An Interview With Henriette Farkas, Director of the Hungarian Angioedema Reference Center in Budapest
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the…
223: An Interview With Dr. Antón Blatnik on the Molecular Mechanisms Driving Neuromuscular Disease
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antón Blatnik, PhD, who recently won a $150,000 grant from Cure SMA to study the molecular mechanisms that drive neuromuscular…
222: An Interview With SMA Expert and Neurologist Dr. Kathryn Swoboda
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kathryn Swoboda, MD, faculty emerita at Massachusetts General Hospital and a neurologist and rare disease specialist who's been…
221: An Interview With Dutch Neurologist Ewout Groen of SMA Europe
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dutch neurologist Ewout Groen, PhD, a member of the Scientific Advisory Board of SMA Europe.
220: An Interview With Dr. Jaime Moore on Obesity Medications and Neuromuscular Disease
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jaime Moore, MD, about weight loss drugs—specifically the role of GLP-1 receptor agonists in treating children with…
219: An Interview With Dr. Natalie Truba on the Psychological Aspects of Gene Therapy
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric psychologist Natalie Truba, PhD, on the psychological aspects of gene therapy in neuromuscular disease.
218: An Interview With Donna Shipp on Her IgG4-RD Patient Journey
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Shipp, a Boston-area nurse who was misdiagnosed with cancer, underwent surgery and later realized she had IgG4-RD. She…
217: An Interview With Abby Bronson of Edgewise Therapeutics About Becker Muscular Dystrophy Awareness
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Abby Bronson, vice president of patient advocacy at Edgewise Therapeutics, about a new effort to raise awareness of Becker…
216: An Interview With Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation. Moore was the winner of the Muscular Dystrophy…
215: An Interview With John Crowley, President and CEO of the Biotechnology Innovation Organization
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), founder of Amicus Therapeutics, and father…
214: An Interview With Dr. Hyun Kim, Director of the University of Minnesota's Interstitial Lung Disease Program
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Hyun Kim, MD, professor of medicine and director of the University of Minnesota's Interstitial Lung Disease Program, about…
213: An Interview With Andrea Wilson-Woods, Founder of Blue Faery, a Nonprofit That Advocates for Patients With Hepatocellular Carcinoma
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Wilson-Woods, founder of Blue Faery: The Adrienne Wilson Liver Cancer Association—a nonprofit that advocates for…
212: An Interview With Dr. Michael Schilsky of the Yale School of Medicine, and an Expert on Wilson Disease
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michael Shilsky, MD, of the Yale School of Medicine, on potential therapies for Wilson disease.
211: An Interview With Yen Chen, PhD, on Brain Fog Among People With Scleroderma
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yen Chen, PhD, of the University of Michigan, on the subject of cognitive dysfunction or "brain fog" among people with…
210: An Interview With Dr. Aleksander Krag on Diagnosing and Treating Alpha-1 Disease
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Danish hepatologist Aleksander Krag, MD, PhD, on the diagnosis and treatment of alpha-1 antitrypsin deficiency (AATD).
209: An Interview With Vesna Aleksovska, a Rare Disease Patient Advocate in North Macedonia
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vesna Aleksovska, chair of the nonprofit organization Life With Challenges. Aleksovska, who has Gaucher disease, advocates for…
208: An Interview With Wesley Michael, Founder of Rare Patient Voice
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Wesley Michael, founder of Rare Patient Voice. Since 2013, RPV has offered patients and caregivers opportunities to share their…
207: An Interview With Katharine Provencher, Director of Patient Advocacy at IgG4Ward!
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katharine Provencher, director of patient advocacy at IgG4Ward!, a nonprofit that advocates for patients and caregivers…
206: An Interview With Cecilia Dueñas, PsyD, on Discrimination and Stigma She Encountered Before Getting Diagnosed With PBC
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cecilia Dueñas, PsyD, on the PBC Research Foundation, and the discrimination and stigma she faced for years before getting…
205: An Interview With Sickle Cell Disease Patient Advocate Golie-Lorenzo Green
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Golie-Lorenzo Green, whose lifelong battle with sickle cell disease led him to advocate for others with the debilitating…
Frequently Asked Questions
Rare Care Podcast has published 234 episodes since August 2021, covering topics in Health & Fitness, Medicine.
Rare Care Podcast is currently highly active with new episodes weekly. Average episode length is 12m.
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